Today I Grieve

Today someone I knew died.  I can’t even say I knew her because I went to high school with her and have not seen her since.  We were FB friends.  Tina had MS or Multiple Sclerosis.  Any serious chronic illness is bad, but she is the third person I know to have been afflicted with MS.  Multiple Sclerosis affects the myelin sheath protecting the nerves.  It destroys the ability of the nerves to relay information.  The degeneration acts like a dead end in the nervous system, the transmission has nowhere to go, the transmission is incomplete.  Besides the obvious physical damage this does, and make no mistake, the physical damage is extensive and gradual, the emotional and mental damage is often far worse.  Not having a sheath to protect the nerves and the neuronal pathways causes emotional labiality and mental instability that is not often understood by the people around the person.  The focus of the disease is usually on the physical manifestations, and the emotional and mental affects are rarely considered.

I supported a friend of mine whose mother had MS.  Jennifer was constantly frustrated at what seemed to be her increasingly demanding mother.  I often reminded her that her mother’s mental deterioration was the illness, and not her mother.  She needed to remember her mother before the mental and emotional damage had become so great.  It was difficult for her, but she gave it her all.  There were still times she wanted to pull her hair out, though.  Her mother had frequent illnesses as her body became weaker from the disease,  yet when the time came for her mother to pass, it was a shock.  Her mother had pulled through so many other times; Jennifer believed her mother would pull through this time as well.  People who have MS are fighters.  They have to be.  After Jennifer went through the initial phase of grieving, she was finally able to do what I had suggested all along; remember her mother before the disease attacked the neuronal pathways which affected her mood, thoughts and behavior.  She rediscovered her mother.

What she discovered was the vast wealth of everything her mother was, in spite of a devastating illness.  She was able to see her mother with a clear mind and spirit and she was impressed with all her mother was able to accomplish in the face of such obstacles.  She had a new appreciation for her mother now that she could see her more clearly, away from the disease and the pain it caused.  It took some time, but she was finally able to close out her mother’s estate in a way that would honor her mom.  She sold her mother’s home to a nonprofit agency that helps children.  She knew that would have made her mother very happy.  

One of the things Jennifer complained about the most was when she had to take her mother to some Mayflower Society functions.  Her family could trace their lineage back that far and her ancestors were one of the first people here.  Her family was on the Mayflower.  She hated those excursions, but she did it to make her mother happy.  It was one of the few things left her mother could still make a meaningful contribution to.  I can still hear Jennifer sigh when another Mayflower event was going to be all day.  Even though her mother is no longer alive, Jennifer was pleasantly surprised to continue what her mother had begun.  Jennifer participates in the Mayflower Society because she wants to, and not because her mother is making her.  I think it is a way for her to keep her mother’s spirit close to her. 

I worked with another woman who suffers from MS.  I see the emotional labiality in her as well.  She can still walk most of the time, but her emotions can be all over the place.  She runs around a mile a minute as if she is trying to live her whole life before the disease impairs her ability to do the things she wants.  She is trying to outrun the disease, I think.  Some of her coworkers are not always kind to her when she is struggling to keep her emotions in check.  Considering it is a health care environment and she is working with professionals, this makes me particularly sad at times.  Molly is a warm and caring person.  She is passionate about what she believes in, and she advocates for those less fortunate than herself.  She always goes the extra mile at work, and for her patients.  But sometimes none of that seems to matter as her emotions are jumping around into the space of others.  Molly works very hard to keep those emotions in check, but sometimes they get the better of her.  I always understood and it did not affect the respect and admiration I had for her as a professional.  There were others who were not so kind, however, and Molly noticed.  As disheartening as it was for me to witness it, it had to be worse for her, but I never heard her complain.  She would get angry at the illness now and then, but the most she usually said was “This sucks!”  To say that having MS sucks is an understatement.

I was happy to reconnect with Tina through FB, though the contact was limited.  She loved to play Farmville.  Her status updates often reflected the wide range of emotions I had witnessed with my other friends.  The announcements on FB were broad and general, so though I saw the fluctuating emotions and frustrations she expressed, I did not know enough about her situation to offer any kind of meaningful encouragement.  I messaged her a couple times with some suggestions I thought might help as a health care professional, and Tina was nice but explained she wasn’t interested or had already tried some of the things I thought might help. I never pressed beyond that because she had a right to her privacy, and a right to live her life on her terms.  The medications that might have helped to regulate her mood she didn’t want to try out of fear of addiction.  Had she been my patient, I would have approached and spoken to her much differently but she was not, she was my friend and I had to respect her decisions. 

Watching Tina deteriorate long distance was hard.  I wanted to help but didn’t know how.  Of course I offered her my phone number, but she never called.  That’s OK, I don’t know what her reasons were, but they were her own.  I saw conflict within her family played out in an open forum.  That was hard to watch as well, because I knew this disease was creating barriers to the people who loved her the most.  It is unimaginable to me to watch someone go through this and to have them push you away.  I think people expect a lot from the person suffering at times, because you hear heartwarming stories about someone who remains upbeat and positive in the face of a health crisis.  One thing I learned from all my years of nursing is that the patient does not have to be brave, upbeat, positive or cheerful for me to care about them.  It certainly makes it easier, but when someone is not, that’s when they need support the most.  There is no rule or standard of how someone should respond when facing a major illness, and certainly they deserve our unconditional patience.  It is very difficult to be patient when you are in the thick of it with them.  I know I did not always succeed and I have been trained to ignore those types of behaviors.  When a patient is acting out, it is rarely personal.  It just feels that way. 

When a family member has such an illness, it is not just the person who is ill.  The entire family is ill.  Everyone has expectations of each other and it is difficult to know how to act, behave and respond.  We are not given a book on what to expect.  The great thing about nursing is that it takes all kinds of nurses to treat a patient.  I often hear nurses complain about another one being too hard on a patient, or this one being too soft on them.  The fact is, some patients need the soft nurse sometimes, and they need the military nurse at other times.  That is why nursing is so amazing; there is room here for just about every personality type.  In families, however, it is far different.  There are family dynamics which have been in place for much longer than the illness and the disease brings them all to the forefront.  It is a lot to deal with.  So while I never judged any of the postings, I understood in general what was happening.  I have seen it played out in facilities before.  I understand everyone was coping the best way they could.

I didn’t know Tina very well, but I have been around MS enough to know what it does.  Tina was living her life the very best she could, though the good days and the bad.  No more could be expected of her than that.  Though my heart goes out to her family, I believe Tina is now free of pain and distress, her body and soul are at peace.  For that, I am grateful.  Sometimes death is a way to right the wrongs, and MS is wrong.  Even though she faced an impossible disease, she lived each day with courage.  She had to, the suffering she endured I cannot imagine, but she did endure it.  I believe the days she lashed out, the days she was in despair….that was not her talking, it was the disease.  But most of all, if it was how she felt, she had a right to feel that way.  To quote Molly, “MS sucks.”

I grieve for Tina, even though I did not know her well these last years.  I grieve for her family because as difficult as it was to have her in their life with the disease, they still loved her and she will be missed.  I grieve for the life she could have had, if MS had not been a part of it.  I grieve because she was so young.  I grieve for the pain she suffered, and for her sadness when she could not do the things she enjoyed.  Most of all, I grieve for the Tina I knew in high school.  She was lively and spunky.  She was a tiny little thing but she was a force to be reckoned with none-the-less.  She was warm and kind.  She was funny.   Sometimes it is hard to separate the person from the disease, but this is the Tina I remember, and this is the Tina I grieve for.  Tina had hopes, dreams and goals for her future that were never realized because MS took over her life.  I grieve for those as well.  Through all the grief there is gratitude because whatever the next step may be, she is free from the body that kept her imprisoned.  Farewell Tina.